PANDAS and Antibiotics

[emma1]

We are finished with our round of antibiotics, and so I am now "watching" my daughter to determine if she should be on long-term low dose antibiotics. I was just wondering if all the children with PANDAS were using long-term antibiotics, or if some have chosen a different route (supplements, etc.). Also, when you stopped antibiotics, did the tics return immediately, or was there a time lag at all? Thanks for the information.

[michele]

Dr. Murphy did not say if long term antibiotics were recommended but she did not tell us to stop them either. She said pen v is recommended for prophylaxis and to treat flare ups with Augmentin or

Omniseph as needed for symptoms of tic and OCD. Also get the household cultured when flare ups happen. They don't get strep on antibiotic prophylaxis but get the autoimmune attack on the brain. I have never stopped the pen v since June but we have had flare ups for months. I think you need to give the vitamins and fish oil omega 3's with the antibiotics. Plus a good probiotic. You may need an immunologist to get the pen v. I know we did.

Michele

 

We are finished with our round of antibiotics, and so I am now "watching" my daughter to determine if she should be on long-term low dose antibiotics. I was just wondering if all the children with PANDAS were using long-term antibiotics, or if some have chosen a different route (supplements, etc.). Also, when you stopped antibiotics, did the tics return immediately, or was there a time lag at all? Thanks for the information.

[emma1]

Michele, thanks for the reply! Our doctor is willing to give Pen V, if we need it. Does your child take it every day? I am extremely nervous having her off antibiotics -- she did so well on it -- some tics, but very, very minor and infrequent.

[trubiano]

Hi! I have a six year old diagnosed in March. We tried in July to take him off PCN because he was doing so well. Exactly two days off the antibiotic his tics started back and he was very emotional. Our Ped gave him a shot of Bicillin LA and within a few hours he was better.

[michele]

What is Bicillin and what makes it work so well? Which Dr. gave this shot? I wonder why it is not used more often if it works so well?

Michele

 

 

Hi! I have a six year old diagnosed in March. We tried in July to take him off PCN because he was doing so well. Exactly two days off the antibiotic his tics started back and he was very emotional. Our Ped gave him a shot of Bicillin LA and within a few hours he was better.

[trubiano]

Bicillin LA(long acting) was given by my Ped. We started out on it every three weeks. It targets only the strep virus so it was supposed to be good long term and not hurt the good bacteria in his system. Our problem with it was trying to push my child in the door every three weeks with him sobbing. The medicine is thick like glue and hurts going in. The needle is very large and he would limp for a couple of days after getting it. There is no way we could continue doing it for the next 10+ years. He did start out on every 4 weeks, but at the end of that 4th week he would start with terrible OCD and vocal tic issues. It took some begging, but I finally was able to get PCN orally and I pray it continues to help. Thank you for the probiotic idea! My local CVS had it and it is SOO much less expensive than what I have been getting. How many a day do you give your child?

[michele]

I was using the recommended doasge on the box of one per day for children. It is 10 billion cells of lactobacilluc GG. I don't know the callibration though. We were giving 4 acidophilus pills a day. They have 600 mg of probiotics in two so 1200 mg per day. I could call the pharmacist. The bicillin sounds helpful but traumatic and painfull! Thanks for the info.

Michele

 

Bicillin LA(long acting) was given by my Ped. We started out on it every three weeks. It targets only the strep virus so it was supposed to be good long term and not hurt the good bacteria in his system. Our problem with it was trying to push my child in the door every three weeks with him sobbing. The medicine is thick like glue and hurts going in. The needle is very large and he would limp for a couple of days after getting it. There is no way we could continue doing it for the next 10+ years. He did start out on every 4 weeks, but at the end of that 4th week he would start with terrible OCD and vocal tic issues. It took some begging, but I finally was able to get PCN orally and I pray it continues to help. Thank you for the probiotic idea! My local CVS had it and it is SOO much less expensive than what I have been getting. How many a day do you give your child?

[faith]

Michele and all,

re the pandas/pitands, does your child get more symptoms with just a simple cold? I'm a little crazy tonight..since late this afternoon my son has been eye twitching (like blinking one eye and looking up into eyebrows) non stop. Although I have seen this here and there, its really prominent tonight. This morning he woke up stuffy, and this evening he's really stuffed up, obviously a cold, which ironically I had mentioned in another post he hardly gets sick. Also, does anyone notice more of that photosensitivity when ill? Past couple days he seemed to eye twitch just when watching tv, and that hasn't really been too much the case in the past.

 

So just want to know if colds are one of the illnesses that can trigger more tics, he has no fever right now and throat seems okay, altho he said it sort of hurt very little last night, but I looked with flashlite and its not red, and he says its okay now.

 

He also ate two pieces of regular white bread yesterday and I let him get chicken nuggets at school on Tuesday, (shouldn't have corn/yeast) so I guess it could be that too. Thump! Any votes? Really, I think this is all getting too much for me, I'm not feeling as together as I was. My confidence level and perseverance is waning.....help....

 

Faith

[emma1]

Faith, I really feel so confused most days that I do not feel as though I should be giving advice, but . . .I did want to say, I have noticed more symptoms when my child is ill or really tired.

[michele]

I second Emma. I notice symptoms increase with every virus also. Also late at night or when watching TV or staring at the computer at night. The only thing you you could do is have everyone in the house checked for strep? That may be the cause of his symptoms. Is he on the antibiotic? He my need a stronger one for a few weeks. I would think the titers elevate with viral infections too. Then an attack is launched in the brain. It is attacking the good cells not the strep but it thinks it is strep. This is an autoimmune attack on the brain. Like rheumatic fever attacks the heart this is targeting the brain. Rheumatoid arthritis attacks the joints. All of these cause inflamation just to different organs. What we need is Dr. Murphy to write a book on PANDAS, OCD and AD/HD with tics. It is a hard thing to understand. I hope I am explaining it right. We need our medical researcher Kim to step in here.

Michele

[faith]

thanks for that, girls,but

I think I'm asking because I'm not in the PANDAS boat, but wondered because Michele, you said your son's titers were not necessarily elevated, and he seems to get worse with any illness, but just wanted to know if a cold fits in there. This just reminds me of the time last year when he had a big increase in the eye twitch (like now) and he wound up with the sore throat/strep, and getting better on the antibiotic (amoxy) ...BUT negative on the titers when tested a couple months later. ..He's had a 24 hour virus here and there and I usually don't see any exacerbation there. In fact, he gets rather quieter on the tics. So there's where I'm a little confused. You know, I hope it is the white bread and nuggets, then maybe I can be convinced the bad tic days are from diet mess ups, hard to really pinpoint because he doesn't react immediately, and I think he can tolerate a little infraction here an there, but not alot -- I think I am not being as methodical as I could be, I should take better notes, ... or if he would just get a red throat and I could have an excuse to take him in. I pray he settles down tomorrow. ... I started giving 1/2 tablet (about 10 mg.) of B6 a couple days ago to go along with the zinc which we started for several weeks now, does anyone think it could be that? Would B6 be a problem? I always had a notion B's were a little touchy for him. ... Aaaaagh!

 

Faith

[emma1]

Faith, Based on what our doctor has said and what I have read, many kids have symptoms when tired or ill. So, I really think it could be that -- kind of overloading his system. He is busy fighting off a germ so his system is just out-of-whack. However, I have also read that some kids have a difficult time and react to B vitamins with more tics -- but I thought that was usually when you tried to supplement with a B complex. The suggestion was to give B vitamins individually (like you are doing!) or as part of a multi. Honestly, it is all trial and error, isn't it? I think I would just try to get him feeling better, and try to ignore (good advice that I hardly ever follow!) the tics, and see if they go away as he feels better.